Cleft lip and cleft palate

Cleft lip and cleft palate are openings or splits in the upper lip, the roof of the mouth (palate) or both. Cleft lip and cleft palate result when facial structures that are developing in an unborn baby don't close completely.

Cleft lip and cleft palate are among the most common birth defects. They most commonly occur as isolated birth defects but are also associated with many inherited genetic conditions or syndromes.

Having a baby born with a cleft can be upsetting, but cleft lip and cleft palate can be corrected. In most babies, a series of surgeries can restore normal function and achieve a more normal appearance with minimal scarring.

Cleft lip

Cleft palate

Usually, a split (cleft) in the lip or palate is immediately identifiable at birth. Cleft lip and cleft palate may appear as:

A split in the lip and roof of the mouth (palate) that can affect one or both sides of the face

A split in the lip that can appear as only a small notch in the lip or can extend from the lip through the upper gum and palate into the bottom of the nose

A split in the roof of the mouth that doesn't affect the appearance of the face

Less commonly, a cleft occurs only in the muscles of the soft palate (submucous cleft palate), which are at the back of the mouth and covered by the mouth's lining. This type of cleft often goes unnoticed at birth and may not be diagnosed until later when signs develop. Signs and symptoms of submucous cleft palate may include:

Difficulty with feedings

Difficulty swallowing, with potential for liquids or foods to come out the nose

Nasal speaking voice

Chronic ear infections

When to see a doctor

A cleft lip and cleft palate are usually noticed at birth, and your doctor may start coordinating care at that time. If your baby has signs and symptoms of a submucous cleft palate, make an appointment with your child's doctor.

Cleft lip

Cleft palate

Cleft lip and cleft palate occur when tissues in the baby's face and mouth don't fuse properly. Normally, the tissues that make up the lip and palate fuse together in the second and third months of pregnancy. But in babies with cleft lip and cleft palate, the fusion never takes place or occurs only part way, leaving an opening (cleft).

Researchers believe that most cases of cleft lip and cleft palate are caused by an interaction of genetic and environmental factors. In many babies, a definite cause isn't discovered.

The mother or the father can pass on genes that cause clefting, either alone or as part of a genetic syndrome that includes a cleft lip or cleft palate as one of its signs. In some cases, babies inherit a gene that makes them more likely to develop a cleft, and then an environmental trigger actually causes the cleft to occur.

If your child was diagnosed with cleft lip, cleft palate or both, you'll be referred to specialists who can help create a treatment plan for your child. Here's some information to help you get ready and what to expect from your doctor.

What you can do

Before your appointment:

Find out any pre-appointment restrictions. At the time you make the appointment, ask if there's anything you need to do in advance, such as restrict your baby's diet.

Make a list of any signs or symptoms your baby is experiencing, including any that may seem unrelated to the reason for the appointment.

Consider taking a family member or friend along. Sometimes it can be difficult to remember all the information provided during an appointment. Someone who accompanies you may remember something that you missed or forgot.

Make a list of questions to ask your doctor. List your questions from most important to least important in case time runs out.

Most cases of cleft lip and cleft palate are noticed right away at birth and don't require special tests for diagnosis. Increasingly, cleft lip and cleft palate are seen on ultrasound before the baby is born.

Ultrasound before birth

A prenatal ultrasound is a test that uses sound waves to create pictures of the developing fetus. When analyzing the pictures, a doctor may detect a difference in the facial structures.

Cleft lip may be detected with ultrasound beginning around the 13th week of pregnancy. As the fetus continues developing, it may be easier to accurately diagnose a cleft lip. Cleft palate that occurs alone is more difficult to see using ultrasound.

If prenatal ultrasound shows a cleft, your doctor may offer a procedure to take a sample of amniotic fluid from your uterus (amniocentesis). The fluid test may indicate that the fetus has inherited a genetic syndrome that may cause other birth defects. However, most often the cause of cleft lip and cleft palate is unknown.

The goals of treatment for cleft lip and cleft palate are to improve the child's ability to eat, speak and hear normally and to achieve a normal facial appearance.

Care for children with cleft lip and cleft palate often involves a team of doctors and experts, including:

Ear, nose and throat doctors (ENTs, also called otolaryngologists)

Pediatricians

Surgeons who specialize in cleft repair, such as plastic surgeons or ENTs

Oral surgeons

Pediatric dentists

Orthodontists

Nurses

Auditory or hearing specialists

Speech therapists

Genetic counselors

Social workers

Psychologists

Treatment involves surgery to repair the defect and therapies to improve any related conditions.

Surgery

Surgery to correct cleft lip and palate is based on your child's particular situation. Following the initial cleft repair, your doctor may recommend follow-up surgeries to improve speech or improve the appearance of the lip and nose.

Surgeries typically are performed in this order:

Cleft lip repair — within the first 12 months of age

Cleft palate repair — by the age of 18 months, or earlier if possible

Follow-up surgeries — between age 2 and late teen years

Cleft lip and palate surgery takes place in a hospital. Your child will receive a general anesthetic, so he or she won't feel pain or be awake during surgery. Several different surgical techniques and procedures are used to repair cleft lip and palate, reconstruct the affected areas, and prevent or treat related complications.

In general, procedures may include:

Cleft lip repair. To close the separation in the lip, the surgeon makes incisions on both sides of the cleft and creates flaps of tissue. The flaps are then stitched together. The repair should create a more normal lip appearance, structure and function. Initial nasal repair, if needed, is usually done at the same time.

Cleft palate repair. Various procedures may be used to close the separation and rebuild the roof of the mouth (hard and soft palate), depending on your child's situation. The surgeon makes incisions on both sides of the cleft and repositions the tissue and muscles. The repair is then stitched closed.

Ear tube surgery. For children with cleft palate, ear tubes may be placed, typically at 6 months of age, to reduce the risk of chronic ear fluid, which can lead to hearing loss. Ear tube surgery involves placing tiny bobbin-shaped tubes in the eardrum to create an opening to prevent fluid buildup.

Surgery to reconstruct appearance. Additional surgeries may be needed to improve the appearance of the mouth, lip and nose.

Surgery can significantly improve your child's appearance, quality of life, and ability to eat, breathe and talk. Possible risks of surgery include bleeding, infection, poor healing, puckering of scars, and temporary or permanent damage to nerves, blood vessels or other structures.

Cleft lip repaired

No one expects to have a baby with a birth defect. When the excitement of new life is met with the stress of discovering that your baby has a cleft lip or cleft palate, the experience can be emotionally demanding for the entire family.

For parents and family

When welcoming a baby with cleft lip and cleft palate into your family, keep these coping tips in mind:

After a baby is born with a cleft, parents are understandably concerned about the possibility of having another child with the same condition. While many cases of cleft lip and cleft palate can't be prevented, consider these steps to increase your understanding or lower your risk:

Consider genetic counseling. If you have a family history of cleft lip and cleft palate, tell your doctor before you become pregnant. Your doctor may refer you to a genetic counselor who can help determine your risk of having children with cleft lip and cleft palate.

Take prenatal vitamins. If you're planning to get pregnant soon, ask your doctor if you should take prenatal vitamins.

Don't use tobacco or alcohol. Use of alcohol or tobacco during pregnancy increases the risk of having a baby with a birth defect.